A Mother of A Premature Child Discusses Her Unusual Birth Experience

Updated: Dec 2

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Host Speaker  0:24 

Thank you for joining us for another episode of I am Able. The goal of our podcast is to bring acceptance and awareness to our communities when working with educating and living with people of all abilities. Our disclaimer, TES, and IRL is providing this podcast as a public service but is neither a legal interpretation nor a statement of IRL or TES policy. reference to any specific product or entity does not constitute an endorsement or recommendation by Te ES or IRL. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. views and opinions expressed by TES or IRL employees are those of the employees and do not necessarily reflect the view of TES or IRL or any of its officials. If you have any questions about this claimer, please contact TES @www.tesidea.com/contact. Us or IRL at www.redesignlearning.org/contact.

Jamie:  1:30 

Hello everybody. And welcome back to I am Abel. I’m Jamie Lord Tovar. And today with me is Asia. Hi Asia.

Asia:  1:40 

Hey, how are you?

Jamie:  1:41 

I’m good. How about yourself?

Asia:  1:43 

I am good. Thank you.

Jamie:  1:46 

So we were we’ve been talking, I interviewed a occupational therapist a couple weeks ago who works at a NICU. And so we thought it might be good to also hear the parent perspective. So can you tell me what led to the premature birth of your child?

Asia:  2:09 

To be honest, it was actually undiagnosed. They tested my placenta but we’re not able, they weren’t able to find an actual diagnosis of why I had a premature baby. But I do remember about two weeks prior to getting a food poisoning. And I went to the hospital because I no longer felt that everything was going correctly. And they said I was fine. But my cervix was thinner. So um, if I can, if I can put my finger on it, it was probably from the food poisoning because my daughter was born with ecoli. So Wow. So I have a strong, like a strong feeling that it was it was due to that.

Jamie:  2:52 

Okay. So so what did they do for your daughter then

Asia:  3:00 

for the E. coli while she was she was treated with so many antibiotics, and they just, you know, kept a close eye on her and made sure that the infection was going down and just basically monitor monitored her completely.

Jamie:  3:21 

So that sounds pretty scary. So so that was during the time that that she was in the NICU then and the neonatal unit intensive.

Asia:  3:32 

Yes.

Jamie:  3:34 

Okay. And so can you kind of describe what being in the NICU was like,

Asia:  3:40 

being in the NICU? It’s so scary. It’s, it’s completely unpredictable. You just never know where you’re gonna get when you have a baby. And it’s a premature baby. The nurses automatically tell you the new you life is a roller coaster. You just never know. Your baby can be doing great one day and then the next day, they’re declining. And then the next day that they’re doing great again, you it’s such a it’s such a scary place. Just like even the facility itself is so scary. You have these tiny little babies and it it’s like nerve racking. I don’t even know how to like it’s so hard to even describe, but it’s scary. It’s so scary. And even though you have all these people It feels so lonely sometimes to

Jamie:  4:33 

Yeah, I can imagine you kind of feel like you’re the only one even though you’re around people.

Asia:  4:39 

Definitely. Definitely. Yeah, it’s scary. You know? There’s no better way to describe it than scary I think scary, though word that’d be belong to that.

Jamie:   4:51 

So how So how was the unit set up? Is it just like a big room with a bunch of incubators? or

Asia:  5:01 

so the way that the the hospital that my daughter was born that it has its stages. So it has a couple of different rooms and you have the micro preemies and then you have things that are ready to go home and you had the premiums that are like, right in between. So my daughter was a micro preemie. So when she was born, she was a tiny baby. So she was in the room with the smallest of the smallest babies. So that room had about, I want to say about six kids. And they’re all in the incubator, and it’s a really quiet room. dark, quiet room. But yeah, they’re all they’re all together in the same room, and an open space.

Jamie:  5:40 

So then, so when you’re there with with other parents, you’re, you’re right there with other parents.

Asia:  5:48 

Yeah, and then it’s like, I mean, you have your parents like, separate and divide you but overall, y’all, y’all together.

Jamie:  5:57 

So you said your daughter was a micro preemie. How early was she?

Asia:  6:02 

She was 17 weeks early. She was born at 25 weeks. Wow. Yes.

Jamie:  6:09 

So how big was she then? When she was born early?

Asia:  6:12 

10. Tiny she was one pound. 12 ounces. Oh, she she fit in my arm? Like if I can hold up my hand. She fit in my hand. Oh, wow. Yeah. Tiny.

Jamie:  6:27 

It’s so good to get to like hold her right away.

Asia:  6:29 

No, I actually had to wait 20 days to hold her. I was not able to hold her. When I delivered her. They put her in the incubator right away. So I was only able to see her through a glass. Like a glass box. Oh, yeah.

Jamie:  6:44 

Wow, that must have been really tough.

Asia:  6:47 

It was extremely tough. Emma was actually sorry, she was a twin. So we also had a son who was born, but he was born 17 days prior to her. Oh, wow. Yes. So I mean, unfortunately, his you know, he wasn’t able to survive, but yeah, I mean, tiny little baby. It’s incredible. It’s incredible.

Jamie:  7:16 

I’m so sorry to hear that about about your son. But your your daughter is is doing great, right?

Asia:  7:25 

She’s doing amazing. Amazing. She is a little warrior. Definitely. Definitely. She gives she gives me gray hair for sure.

Jamie:   7:38 

So So how old is she now then?

Asia:  7:41 

She is two years old. Oh, she’s definitely hitting those terrible twos. She’s in the mic stage. So everything’s about her and she can do everything on her own. According to herself.

Jamie:  7:59 

Yep, that sounds like terrible twos to me,

Asia:  8:02 

my daughter. Everything you can think of. That’s, that’s my daughter.

Jamie:  8:10 

Well, that’s good. You have that at least now. Now you have other things to worry about that she’s wants to be so independent.

Asia:  8:17 

That’s definitely you go from NICU to what is in your mouth? Every day all day?

Jamie:  8:26 

No, you have no time to rest?

Asia:  8:29 

I definitely don’t I wish I did. But no, it’s it’s incredible. It’s incredible. I wouldn’t trade it for the world. That’s awesome.

Jamie:  8:37 

That’s awesome. So won’t get back to being in the NICU. So what kind of therapists Did you work with there? Did you work with like an occupational therapist or physical?

Asia:  8:51 

There? I did not. She was just in the NICU. Oh, I did do Noida to occupational therapy. And she didn’t do much of it. It was towards the end of her stay. She did physical therapy. She still went home with an occupational therapist as a physical therapist.

Jamie:  9:09 

Okay. Okay. So I with occupational therapy, a lot of times in the NICU, it’s more of working with the parents and and doing some education and stuff like that. Is that kind of what

Asia:  9:24 

Yes, it’s more it’s more of a science and within the baby itself. So they kind of teach you little things that kind of help you when you go home and when you’re you know, when you discharge from the hospital. Right.

Jamie:  9:37 

So what what was like the, the thing that you were like, like the most surprised about like the occupational therapist, like any suggestions where you’re like, oh, wow, that was like, I would have never thought of that or did you have any like aha moments with?

Asia:  9:55 

I think it just like they teach you a lot about like this Let’s just say something small, like feeding correct. And so things that like, if your baby’s not eating correctly, just even repositioning the baby can help you, you know, get the baby to eat more, or, you know, like, those are moments that you’re just like you wouldn’t know as a parent, especially as a new parent, that if you maybe you lay your baby to the side and feed him or her that they will take more milk. And you don’t know that. So it’s just like, the occupational therapist shows you things that are like, they’re helpful, and they’re necessary. And we don’t get taught that anywhere else. Okay, all right. So I think that would probably have been like the best because she was struggling a little bit with food. Oh, yeah. So that was a moment that I was like, okay, I can do this.

Jamie:  10:50 

Give you a little bit of confidence and, and helping your daughter.

Asia:  10:55 

Yeah, I’ve been shunned more than anything, I think.

Jamie:  11:01 

So what? So while you were in the hospital, who did you turn to, for support outside of like medical professionals,

Asia;  11:15 

I would think that my parents, my sibling, my sister, my husband at the time, so I think that him and my best friend, I think your inner circle is probably your, your biggest support. So you being able to rely on people that you’re close to, I think it’s extremely helpful. It’s extremely helpful. So I think my my closest family and like my best friend, was, were the people that no matter what I can call that whatever time and we would be able to, like, help me with any situation that I needed. And not just that, like if I was like tired, or I was not feeling well, they would be the ones to go and help me feed my daughter. Like her feeding so so they were very helpful.

Jamie:  12:04 

Have to also do like, where you have the baby on your skin? And did you have to do a lot of that therapy.

Asia:  12:14 

We did a lot of kangaroo time. At the beginning, my daughter was very sensitive. So it wasn’t until maybe she had already hit maybe like six weeks that we were able to start doing that. I heard dad would be the one that would do the most of the kangaroo time. Um, you know, they recommend the man to do it because they built a bond with with their dad. But for the most part, it would be him that would do the kangaroo but every once in a while we’ll sneak in and steal it from him. Definitely.

Jamie:  12:49 

So you didn’t have to You didn’t have to ask any of your other family members or anything to help you guys with that part. That part?

Asia:  12:55 

No, I think for the most part, we were there when they need to be. She didn’t start getting held by my mom. Probably. Too later. I think at the beginning they were only allowing parents. Okay.

Jamie:  13:11 

Oh, yeah. Okay. So Did did you have to use any specialized equipment or anything?

Asia:  13:21 

Fortunately for us, we didn’t she just had well, she had the breathing machine. Okay. She has a breathing machine. She had the chief tip of the nose. But I personally did a half to learn to use them. They were completely used by the doctors and the nurses. So I didn’t technically have to learn to use them. But she was on. She was on the machines for a pretty long time.

Jamie:  13:47 

But then when you when she when she went home you didn’t have

Asia:  13:51 

lucky for us. She came home with absolutely no equipment. She came home ready to come home.

Jamie:  13:57 

Nice. So yeah, I’m sorry.

Asia:  14:02 

That is, which was good. Because yeah, because they, for the longest time they were saying that she was gonna come home with on oxygen, but she was like, Look, I’m not coming home and oxygen. Wow. Yeah. She’s a little worried, too. Super. Cool.

Jamie:  14:19 

So how long was she in the in the NICU?

Asia:  14:23 

She was there about 131 days for about four months Sunday. So she was there for quite a while.

Jamie:  14:35 

Wow. So basically, like the entire time that she needed to be full term, right?

Asia:  14:43 

Correct. So she was she was actually there longer. She was there about three weeks longer than head to date. Okay. So yeah, she she was there for a long time.

Jamie:  14:57 

You must be ready to never see another hospital.

Asia:  15:01 

I’m ready to like never, never another incubator again,

Jamie:  15:07 

right?

Asia:  15:09 

Oh, my gosh, no. Yeah, it’s traumatizing. It’s, it’s traumatizing.

Jamie:  15:15 

I can imagine. Yeah. I mean, I’ve never been through that. I’ve only heard other people’s experiences. So it’s, it’s got to be really tough to go through it.

Asia:  15:29 

It’s tough, but you know it, it makes you a stronger person. For sure. Like, you learned so much from from being in the situation that you were in? Yeah.

Jamie:  15:44 

So, so now she does she, does your daughter have services now?

Asia:  15:51 

She just had the occupational therapy and physical therapy. And she has it once a week. And she enjoys every single second of it.

Jamie:  16:01 

Yeah. So yeah. Like, make sure you’re hitting your mouth, you’re developing

Asia:  16:07 

sadly. So they help with milestones as you should be leading. Or if she they see that she’s a little bit delayed in anything, they’ll work on that with her. And they, you know, they give her the time that she needs to be able to succeed.

Jamie:  16:21 

That’s awesome.

Asia:  16:25 

I’m very thankful for them.

Jamie:  16:29 

So what advice or information do you would you like to give to families? who are experiencing what you experienced being in a NICU? Do you have any advice?

Asia:  16:44 

I think that there’s so many things that you can advise parents, because it’s so scary when you go in. But I think more than anything, I think it’s learning to trust the people around you, the professionals around you, learning that they know what’s best for your child, because sometimes we we become overbearing on our own kids, we don’t allow them to do their job. And I think that learning to just trust them. And then learning to trust your your baby and understanding that your baby is strong and understanding that they they the baby, I don’t think that we have enough credit. Because it’s like, we’re like they’re tiny, they don’t know what to do, but they know exactly what to doing. And he’s professionals that are amazing too. And to trust the process, to trust that you that they will get to where they need to more than anything, don’t compare your kid to another baby, because your baby is going at its own pace. And you can’t be like, Oh, well, that baby’s going home and my baby’s not because your baby will go home when they’re ready. And I think it is so important just to just to trust trust, I think trust is the more the most important thing. And even such thing as like taking a break if you need it and trusting that your partner or that a family member will step in and help you when they need to, or taking breaks or, you know, it’s like, closest to something simple as learning to be friend because your family sometimes ask questions that you’re that you don’t want to answer or that you’re not. You’re not sure how to answer because you don’t have the answer. Or let’s see an example. When is your baby coming home. Because we never know, your baby can be scheduled to come home in a week. And in a week. They’re like your baby’s not ready. So learning to be firm. With your with your supporting team. I think it’s so important. I think taking the rest, take time to recover both physically and mentally because it’s exhausting. If you don’t rest, you’re not going to be 100% for your baby. So I think it’s so important just to take a step back, take a breath and then just know that everything’s gonna be okay. I think that’s the most important. That’s really good advice.

Jamie:  19:19 

That’s really good advice.

Asia:  19:21 

Yeah. I think yeah, I mean, you know, like we forget as parents that like, it’s okay to need other people to help us.

Jamie:  19:30 

Right, right. Yeah. I mean, you know, we all need supportive other people. It’s just been able to, to, to tell other people that that you

Asia:  19:41 

exactly, take the professional help. Definitely, whether it’s therapist, for you or for your baby, just let them help you.

Jamie:  19:58 

Know, and So that kind of kind of answers my question about how others can be more supportive of families. But do you have any other suggestions about how others can be more supportive of families?

Asia:  20:15 

And I think, yeah, I think learning how to approach a parent in the NICU is essential. I think sometimes we need to stop asking questions that, like they said that the parent doesn’t have the answer to and learning when you’re, you know, learning to be supportive rather than curious, I want to see, because sometimes you as a person, you want to be curious, but it’s overwhelming on the parent. So learning, I think learning how to ask certain questions, learning how to approach a parent, because it’s very easy to say, When is your kid come home, and you don’t understand how the parent feels because the parent doesn’t know. And they’re struggling every day to get their baby home. So learning to not be overbearing is so important. Learning to be supportive. is another thing like learning learning how to help learning how to help, that’s the best way to put it. Yeah. It’s important, it’s important because as a support team, you need to be there for the parent and for the baby.

Jamie:  21:27 

So what are some of the questions that people asked you that you were just like? I don’t know how I mean, I don’t want it. I didn’t want that question. asked. You know,

Asia:  21:40 

I think, yeah, I think for the longest time, I just shut down everyone. And they said, I am not seeing any calls any text. I am shutting down all access to everyone outside because the questions were overwhelming. The first question that was the hardest on me was, When is the baby coming home? When is it? I don’t know? I’m sorry. I don’t know. Why is your baby not eating correctly? Why is your baby not eating what it’s supposed to? Those are tough questions. But then come the parents who’ve never had a baby in the NICU with Have you tried doing this? Have you tried doing that? And then you’re like, Have you ever had a baby in the NICU? It’s not, it’s not that easy. It’s not like I can just be like, Look, my kid is a healthy 10 pound baby, and I’m gonna put the bottle in the mouth, and they’re gonna automatically know how to do that. So I think like, those questions, and those that advice, it’s hard when you haven’t been in that situation. So definitely The when is your baby coming home? Was my top my top pet peeve?

Jamie:  22:53 

Yeah, I can imagine. So that’s like, questions you want to ask like, the parents like support group, right? Like, yeah, we want to ask annoying questions like, like, tell us to ask asks somebody else in the family minute.

Asia:  23:09 

Like, um, I don’t ask anyone. The baby, the baby will be the one who tell you, they will tell you, but I didn’t know when you’re ready.

Asia:  23:21 

I’m not going to tell the baby when she’s ready. She’s gonna stop me. And it’s true. Because literally from one day to the other. I was like, they’re like, go home and prepare everything because you babies coming home? And I’m like, what? So we really have no estimated date at all?

Jamie:  23:40 

Yes, definitely.

Asia:  23:41 

If we can deviate from those questions, it would be amazing.

Jamie:  23:49 

So what if you do you have any advice for what people could do? Because you know, people always want to be helpful. And like so if, if you know that a parent is going through having a baby in the NICU? Do you have any advice for like, maybe things they could do besides ask questions about how

Asia:  24:13 

Halloween I definitely felt like let’s just say I’m going to use an example my best friend, she was probably the most helpful without being like a helicopter, best friend. She was more like, helpful in different ways. So she would come over, she would like help me build the crib. She would ask me if I’m tired that she would go and do the cares for the baby which occur means I change the diaper to the temperature. She would offer that she would offer things that were helpful for me to do here at home that I wasn’t able to do here because I was always so busy in the NICU. And so she would just, you know, like little things like, go to the store and buy baby clothes or, you know, things that the baby needed when she was going to come home, such as the car seat or installing the car seat for me. Because your time as a parent in the NICU, you’re the most of the time are you spending is in the NICU. So anyone that can help you around, because a lot of the time we’re not prepared, especially if they’re Michael premies. Like, we’re not prepared with things because we’re not expected to deliver so soon. So if you guys can help as a support helping with things around the house, it’s more than it’s more, it’s like, it’s so helpful. And we don’t think about that, because we think automatically, baby, but no, the parents need the most help. Because the baby’s being taken care of by professionals. Right. Okay. I think that’s probably the best thing.

Jamie:  25:48 

Cool. All right. Yeah. Cuz I mean, people want to know, you know, it’s like, you want to be helpful. You. And so that’s, that’s great. But

Asia:  25:56 

yes, I think definitely help the parents because there the ones falling apart!

Jamie:  26:00 

The honey do list and clear it off.

Asia:  26:07 

Okay. Definitely. Yes. Yes.

Jamie:  26:13 

Right. Well, let’s, I think we went through all of the questions that I had, is there anything else that you wanted to type?

Asia:  26:23 

I think I think you know, just take a breath. If your babies in the NICU, just take a deep breath, and no, no, no, your baby’s stronger than you think. And that they are all true warriors. And they fight every day for their own life. So just give them the credit that they deserve. Because even though they’re a pound, two pounds, they’re amazing. And they have so much power in that little body that we fail to give them credit for.

Jamie:  26:54 

Yeah. They’re so tiny. They’re growing so fast. I mean, you know, they’re, they’re like little mini superheroes.

Asia:  27:03 

They are definitely superheroes. They look so fragile, but they’re anything but that’s. Yeah. Yeah. Definitely. I think that’s that’s the majority of it. Just, you know, trust the process.

Jamie:  27:19 

Okay. Well, I really appreciate you taking the time to talk with me today and giving those of us who do not have children or aren’t really sure how to help our friends and and relatives who may be going through the same thing.

Asia:  27:38 

Yeah, thanks. Thank you so much for having me. I definitely appreciate it.

Jamie:  27:44 

I’m so glad to hear that your daughter is doing so. Well.

Asia:  27:48 

You think she’s doing well. She is definitely a monster.

Asia:  27:53 

In a good way.

Jamie: 27:55

Though she’s a superhero.

Asia:  27:57 

Yeah. She is definitely a little superhero. She is. She’s incredible. She’s incredible. They are tough, because he’s like, they are tough. They come out here and they’re like, ready to like, conquer the world.

Jamie:  28:09 

Yeah, yeah. Well, I mean, hey, they’ve they’ve had quite from the time but you know, they were born so

Asia:  28:16 

definitely, yes. They they truly are. Troopers. Thank you again. I appreciate it. Much.

Jamie:  28:24 

Thank you have a good one. You too.

Asia:  28:26 

Take care. Thank you. You too. Bye bye.